For the Love of Ivey

Today is Rare Disease Day. Ivey falls into this catergory. With her known diagnosis as a deletion to her 21st chromosome, she is a rare little bird. There is no assigned name to her genetic abnormality, no small group of children to connect with, no parents to get advice from, no associations what-so-ever, none of her doctors have seen this before. So please take some time to think about how this rare genetic abnormality affects Ivey, her family and all of us who know her.

Yesterday our sweet dog, Tara, died.  She came into our lives before we were married.  Through the dating days, engaged days, pregnant days, baby days, toddler days, Ivey days, little boy days and all those in between she was there.  Each stage of our lives was her life.  She is, was and will be loved.

Sunday mornings can be a chaotic peaceful in our house. On a normal Sunday morning, Matt and I are crashing. Normally – we don't have a nurse on Saturday nights so we are up watching Ivey and the brutality of that hits right around the sun coming up on Sunday---add to that two boys who wake the roosters up to crow in the morning with no conception of easing into the day. It is obvious to say that our attendance at church since these nurse-less weekends started a few months ago has been sporadic. I am pretty certain – God knows where we are – literally – in all senses of the word. With that said, we did have one of Ivey's sweet nurses last night since Ivey had extra hours hanging out there from being in the hospital earlier in the week. So I got up this morning, switched places with Ivey's nurse so she could go home, started up a movie for the boys, put our sleeping Ivey in the bed with her sleeping daddy and our sleeping dog, got my flow of caffeine started….and settled h...

It doesn't mean to be in a place with no noise, trouble or hard work. It means to be in the midst of those things and still be calm in your heart. Author Unknown That peace is a peace that I strive for. Every day. However, I fall short of it every day, but I want it. And I do think that eventually – I'll get there. When I do find that peace in one area of life, it never fails, chaos has ensued in another. Lucky for me I live with a man who lives in 'that' peace and always remains calm in his heart. I honestly don't know how he does it, but watching him gives me hope that someday I will find that peace too.

yippee.  the doc just left and gave us clearance.....to go home.....today!! i must hurry and pack before they change their minds -

This morning while Ivey and I broke out of her room, a room that doesn't have direct sunlight; we did what all wild overly restricted girls in need of Vitamin D do --- we did laundry. Here at the hospital there is a place for families with washers/driers, rooms for family to sleep, showers, etc. This place is prepared for those in it for the long haul. I'll have to admit that sometimes it is a great place to be alone, especially late at night or reallllly early in the morning when you need a good cry. It is also like the water fountain - but stories told in the laundry room aren't rumors or hear say..nope, no gossip.  Instead what you get would wipe out any acclaimed reality TV, because the reality is that it is just that...real reality.  Today there was a lady there.  She wore a look that I have seen in the mirror from time to time and in other parents that roam these halls.  The look of stress, overly tired, little sleep and beyond worried - yet, still tryi...

Looks like we will be here a few more days.  Tomorrow Ivey will repeat the video EEG.  She is feeling better.  She has been taken off one antibiotic, but will continue with a second.  Hope to see you all soon!